My boy was diagnosed a couple of days before his 13th birthday and he turned 18 at the end of last year. He’s turned from a child into a young man during these five years and had Type 1 diabetes with him all the way.
I’ve been thinking back over the ups and downs of the last five years and wanted to write down some things I wish I’d known:
- Numbers do not define your child or you. Your child is not a number and the numbers that come along with diabetes do not make you a good or bad parent. They are numbers, your child is not a number and you are as a parent should not be defined or define yourself based on these numbers.
- Blame, jeez, I hate this word. There should be no blame. Not for less than perfect blood glucose levels or HbA1c, not for your faulty gene pool, not for anything around the management of diabetes and especially around the numbers which dominate so much of your role as a support person. Watch the language you use around your child in relation to diabetes, as some of the traditional language used around diabetes contains implicit judgement. I was so lucky that the #LanguageMatters movement came about not long after my son was diagnosed and it helped me hugely to talk in a way that did not judge my son. “Testing” soon became “checking” and I eliminated words like “control” from our vocabulary. More than this though, I understood it was a mindset and continue to be careful in the language I use around my son.
- Perfection is not a goal and if it were, it would be a big dud of an own goal! It’s more than likely that despite your child’s and your every effort you will not hit targets set. That’s the gig and accepting this sooner rather than later will make life easier.
- Love. Love your child and yourself and all your imperfections. All the crud that goes around diabetes will swirl around you in an ever changing maelstrom but at the centre of that, hold your child close to your heart.
- Question authority if you need to. We found ourselves in situations where we lost trust and felt badly treated. It is alright to walk away from a situation where you feel your child is not being cared for in a way that you feel is appropriate. You are not powerless even when it may feel like you are. I wish we had made changes much sooner.
- Believe in your child. Despite the scary stories and terrible things you hear about diabetes, your child can live a full and happy life. All the hurdles that I imagined in my head, from going on school camps, to working part time and even going out drinking all happened and my boy is still here, sticking his middle finger up at the universe.
- Sit with the sadness. Your child’s life, despite your and their best efforts, is not quite what you thought it might be. Sometimes I allow myself a sad day where I acknowledge this, and let myself feel the darker side.
- You are not alone. Find your diabetes tribe: ask for support when you need it and try to be of support when you see similar struggles in others. After one terrifying Google search, I had avoided Social Media when my son was first diagnosed. Some time later, I stumbled upon a couple of blogs, and then started to write my own. Writing, really helped me process how I was feeling as the parent of a child with diabetes and it brought me into contact with other amazing parents and people with diabetes. I was given real practical help when we reached a crisis point and also private emotional support which totally helped me understand what had occurred and allowed me to process it and move on.
- Think carefully about your online presence, as one day your child may read what you post. I always have this in my head when I write and try to focus on issues from my perspective, as a parent. My online presence is anonymous, other than using my first name on Twitter. I have never written about my son’s HbA1c or posted his blood glucose levels. There are no photos which could identify our family or him. For me this has been important.
- You are strong. When you have a child with Type 1 diabetes, you learn how strong you can be. You have no choice but to help and look after your child and can survive on minimal sleep, hold down a job, maintain a relationship with your partner and some friends and do all this whilst constantly being aware of everything your child is doing.
- Your child will be fine. You have spent years waiting for the day they can become independent young adults. You have been a team, working together, learning about how their body responds to so many different variables. They know how to do this and they know that they have you too, whenever they need you.
- You will be fine. As my son said to me recently, “Chill mum, I’ve got this.” And I took a bit deep breath and said to him,”You know what? I think you do!”.
That’s all we can do, each and every day. We may get it wrong, we may stumble and make mistakes, but we put one front foot in front of the other and try!